Talking About Autism: Autism Awareness (aka When You Think You’re Aware But You’re Not)

Today (April 2nd) is World Autism Awareness Day. The entire month of April is Autism Awareness Month. Autism blogs are already awash with articles on the awareness/acceptance argument, the evils of Autism Speaks, the tokenism of one day out of 365 and one month out of twelve for building awareness and the pointlessness of blue light bulbs. Those of you who know me well will not be surprised that I have views on these subjects and I may well write about them during this month. (Sneak preview: awareness is not enough, we need to foster acceptance too; political will and societal change are the only meaningful way to improve autistic lives; we should be listening to autistic people and including them in any campaigns on their behalf; society needs to accept autism as an irrefutable fact of life and stop giving autistic people a hard time when they act “autistically” or ask for accommodations to make their lives more bearable; awareness and acceptance is for life, not just for April.) However for this post I want to start with the most pressing and most basic issue of all: we do need awareness and raising awareness is a Good Thing.

[To my autistic followers: STOP! I know you’re probably foaming at the mouth right now because I’m in favour of awareness rather than promoting acceptance as suggested in autism blogs everywhere but wait, hear me out. I’m going somewhere with this……]

To my allistic (non-autistic) followers: if you read what autistic people themselves are saying about Autism Awareness Month you will find that many autistic people believe a month of awareness to be tokenism and patronising, taking issue with the first person language bandied about (“person with autism”, as opposed to “autistic”), the puzzle piece imagery (implying that they are puzzles to be worked out or are incomplete), the blue branding used by Autism Speaks (reinforces the stereotype of autism as something that only happens to boys), and Autism Speaks itself (an organisation that is searching for a test and cure for autism and enforces a victimised portrayal of autism as a tragedy to be avoided). Autistic people do not want pity and awareness, they want acceptance and understanding and for people to let them be unashamed of who they are and how they behave. Most of all, autistic people want to be consulted and included in campaigns conducted on their behalf. Hardly a surprise.

Living with autism is like LifeExtra.

Okay, now we’re all on the same page, let’s carry on. Without wanting to slip into cliché territory, I have been on a journey these past few weeks. I started this blog in January as the mother of a ten year old autistic son, keen to share my experiences with other parents and give them some encouragement that autism does not preclude a good life for children or parents. Life with our son has been both fantastic and frustrating. There have been tears and moments of failure, there have been highs and moments of celebration. In other words, it’s been a fairly typical parenting experience except that living with autism is like LifeExtra. It’s ordinary life but it comes with an extra level: more effort required, more patience required, more understanding required, more energy required, more confusion experienced, more frustration, deeper joy, greater love, greater satisfaction. It’s a life of more and sometimes that’s a good thing and sometimes it’s a bad thing. It is what it is. And that’s what I’ve been trying to convey and will continue to try to convey to allistic parents of autistic children and to the allistic community at large. Autism is different but it doesn’t mean your child will not experience a good quality of life, nor does it mean that you can’t be a happy family, despite some challenges along the way.

Recently I’ve received feedback on the Tumblr version of my blog from autistic people and this led me into reading their blogs about autistic life and talking to autistic adults, especially women who are chronically under-diagnosed in number and therefore whose experiences are much less publicised. This has given me an insight into the life my son will most likely experience in the future. I’ve learned a lot. I’ve learned about their (often bitter) frustrations with allistics and with society in general. I’ve learned about the patronising attitudes, assumptions and speech they endure from allistics, which they call ableism, I’ve learned about the sensory hells they experience that don’t lessen as they grow up, I’ve discovered that the compulsion to release pressure through activities called stimming is not just an urge but is also a pleasure and being prevented from stimming is incredibly stressful. I’ve learned about invalidation from parents who are so against their children being diagnosed autistic that they’d rather let their children suffer loneliness, stress, sensory processing problems and even mental health issues than refer them for diagnosis because of the stigma of being diagnosed. I’ve learned about the autistic adults who live with the drain of having to suppress their behaviour and needs in order to “pass”, ie fit in and succeed. I’ve learned about adults who have lived lives of confusion and disconnection because they have been wrongly diagnosed with mental health problems or were never diagnosed with anything because autism was not well known in the past and who have lived with the self-imposed labels of “failure”, “loser”, “lazy” and “stupid” because they never knew why they couldn’t do what their peers seemed to do so easily. I’ve read stories of intelligent and engaged people who can’t work because of physical or mental difficulties but want to, or who do work but doing so takes every ounce of energy just to get through the day because everything is too loud and too bright and too confusing and there’s nothing left in the tank when they get home. And then they have to get up and do it all again the next day, and the next day and the next day until they burn out. I’ve learned about spoons and autistic burnout which is a real thing: the point at which an individual has expended all their energy (spoons) into fitting in for so long that they suffer a significant mental and physical breakdown, particularly if they are not diagnosed and cannot ask for accommodations through employment law. I’ve learned about adult autistic meltdowns: meltdowns do not stop when a child grows up and they are not only caused by physical sensory overload but also by emotional overload.

At the same time as reading these stories of woe and struggle and bitterness, I’ve read stories of happiness and strength and contentment at knowing who they are. I’ve read about the joys of indulging in special interests and sensory stimulation and the knowledge that their lives are good and full, despite challenges posted by autism. I’ve witnessed a community of comradeship, belonging, mutual support and strong advocacy for their rights. I’ve seen teens, twenty somethings and thirty somethings claim equality with allistics but face constantly having to explain their behaviours, needs and desires to people who don’t understand and don’t want to change how things are to accommodate these inconveniently different people.

I’ve heard their stories and every one shares a common theme: I have a life that matters. I value my life. I want to live it to the full.

I’ve heard their stories and every one shares a common theme: I have a life that matters. I value my life. I want to live it to the full. Autistic people are here, among us, many undiagnosed. They are here, and there are more of them being discovered every day. And I may be one of them and I never knew until now.

Oh, I knew about autism; when I was a teenager in the eighties Rain Man was one of my favourite films. I became aware of autism and some of the more stereotypical autistic traits through that film (male, non-verbal, self-injuring, no eye contact, difficulty communicating, incapable of effective self-care, etc). A few years before I became pregnant autism began to become more widely known and even celebrities started talking about their autistic children. Then came the MMR jab/anti-vaccine hysteria and autism was brought into the mainstream news. So yes, I was aware of autism. I was aware enough of it to recognise it in Tom when he was around two years old. Yet every time I raised issues with our doctor or the health visitor, it was brushed away as late developing or being a walker rather than a talker. Eventually the nursery Tom was attending raised their concerns with me and I felt great relief that someone else had noticed what had been so clear to me. They referred their concerns to our doctor and from there the whole diagnosis process began. Three years later, when he was five and a half, Thomas was diagnosed as “high functioning” autistic.

My whole life had revolved around him and his autistic needs for over three years, how could I NOT be aware of autism? So how did I miss it in myself?

Of course by then my whole life had revolved around him and his autistic needs for over three years, how could I NOT be aware of autism? So how did I miss it in myself? Well for starters it was not public knowledge when I was a child. Then came Rain Man and male, severe autism, and then the MMR jab and more male, severe autism. “High functioning” autism, also often called Asperger’s Syndrome up until 2013, was only included in official standardised diagnoses in the nineties, by which point I was already an adult in my twenties and it was still seen as a male disorder. Yet now when I look at the characteristics my son and I share it seems obvious that I have some level of spectrum disorder: sensory sensitivities; problems with executive function – organisation, time management, motivation, lack of focus, inability to start tasks, hyper-focus when engaged in a task, inability to transition from one task to another, inability to identify physical needs; emotional and social difficulties – lack of emotional self-regulation (over reactions), inability to identify emotions, inability to understand the motivations and meaning behind people’s words or actions, emotional immaturity, social awkwardness; clumsiness; a dislike of surprises or change and adherence to routine. The list is extensive and continues on quite a bit longer.

From talking to autistic women on Tumblr and reading their blogs on WordPress I see that their experiences growing up were very similar to mine. If it’s not autism then it seems to be another neurological condition, maybe ADHD or bipolar. What is clear to me is that my lifelong struggle with depression, anxiety and insecurity and the innate knowledge that I don’t belong has been rooted in a different way of perceiving the world and is not something that can be “cured” or overcome by just trying harder. I have been referred to an adult autism diagnosis service; my path has begun and I’m looking forward to finding out more.

Autism presents in so many different ways and this brings us to Autism Awareness Month.

My story is not unusual. As autism is becoming more understood and more children are diagnosed, greater numbers of parents are presenting for diagnosis just as I have, and this includes more women. Autism presents in so many different ways and this brings us to Autism Awareness Month. We need more awareness. We need to start at the very beginning and educate people about autism. What it is, what the traits are, so they don’t go through the same misery of non-diagnosis or invalidation and ableist expectations that this generation has. We need to challenge the stereotypes of male, white, severely disabled, non-verbal children.

BUT then we also need to remind people that autistic children grow up to be autistic adults. Services and support that end at age 18 is not good enough. Only 16% of adults in full-time employment in the UK is not good enough. Chronic under-diagnosis of girls and women is not good enough. Laughing at stimming and mocking autistic behaviour is not good enough. Calling autistic people crazy is not good enough. Invalidating and denying children’s requests for diagnosis is not good enough. Questioning people’s clinical diagnosis by saying “they don’t look autistic” or refusing their requests for accommodations in school or at work because they are “too capable to be autistic” is not good enough.

Awareness of autism is not the same as awareness of what it is to be autistic and what autistic people need. That is the awareness we should be promoting just as enthusiastically as the media friendly, child-focused, well-intentioned but pity laden, jigsaw/blue-heavy awareness campaigning that will be going on this month. That is the awareness that naturally leads to understanding and acceptance. And a blue light bulb will not cut it, I’m afraid.

Post Script:

If you want to support an autism related organisation that works with autistic people, consider the National Autistic Society, the Autistic Self Advocacy Network or the Autism Womens Network. The latter two organisations wear red during April and use the campaigning phrase “Red Instead” in protest at Autism Speaks’ “Light It Up Blue” campaign and prefer the autism infinity symbol over the jigsaw puzzle piece imagery. Please ensure that any charity or organisation you are donating to or supporting in some other way consult and include autistic people in their planning. Autistic people will thank you.

Autism infinity symbol by janeb13 on Pixabay.com

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